Discovering the Creative Use of Outrage

RARECast - A podcast by RARECast - Thursdays

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When a doctor delivered a devastating diagnosis to Pat Furlong for her two sons with Duchenne Muscular Dystrophy, she refused to sit by and just watch them slowly die. She marched off to Washington to corner her Senator and the director of the National Institutes of Health, borrowed money to fund her sudden role as a patient advocate, and brought together academic researchers to get them thinking on how they could tackle the disease. We spoke to Furlong, founding president and CEO of Parent Project Muscular Dystrophy, about her experiences, what patient advocates can do to raise awareness for their causes, and how they should think about best leveraging their investments.